fibro

All posts tagged fibro

It’s what’s on a bag I recently purchased, one of those bags that hang in front of the registers at T J Maxx. Love it.

Today I am living by that saying, as I did yesterday and the day before. I have hives again. No where on my body where I can hide them ~ smack on my face. When I get hives, I feel especially run down. More than the average fibromyalgia day.

Just tapering off of steroids after adding plaquenil to my morning and evening meds. A few weeks on prednisone and I blew up … Puffy face, etc. Now I have to contemplate if I take them again for the hives. That’s what the doc prescribes for me when I have hives. For the record, I like prednisone only because I can walk better and do a little more, but I do not like the weight gain one bit.

Fibromyalgia stole my life…at first, a little at a time. Looking back, I can now see the symptoms, sometimes years apart, appear and disappear.

About six years ago, when visiting my brother with pancreatic cancer, I had to get out of the house for a while. My brother needed rest and he felt like he had to entertain me. He didn’t of course, but I told him I’d make plans and would not be back until late, and to not worry about me – just rest.

I called my very good friend and we made plans to go to an old hangout for a few drinks and a little dancing. It was perfect. I got to give my brother a break, got to see my friend, and got to let my hair down. I loved my brother – he was my best friend, and although I was oldest, he was my older brother in how we treated each other. His situation was rough on me too…I was losing what I’d considered my only ‘real’ family.

The night out was perfect. I drank, I danced, I laughed! By the time I got back to the house and in the shower, I began to feel a fatigue in my legs I’d never felt before. I actually giggled to myself thinking it had been too long since having so much fun and thought a good night’s rest would cure it. I drank a bottle of water and laid down for the night.

2 pm the following day, my brother’s wife knocked on the bedroom door. I thought it was much earlier, maybe 7 am – I didn’t think it was so late and it felt like I hadn’t slept all night.

My sister-in-law peeked in and asked if I was ok. I sat up in the bed and asked if my brother was up. She said he was and has been waiting for me to get up. I smiled, thinking how endearing my brother could be. He was excited I was there, despite how awful his life was turning out.

I told her I’d be there in a few minutes.

I had a hard time moving my legs to the side of the bed and the skin on top of my legs were on fire and itching at the same time. I pulled the covers back and OMG! My thighs were swollen 3x their normal size and the skin on the top of my thighs looked paper thin and as if the skin was about to split open.

Now the pain. My brain had registered what was going on…something very very wrong.

I ended up in the nearest ER…and, as what I now see as the usual, they could not explain what was happening. I ended up on pain pills and in bed the rest of my visit. I made sure I spent as much of my bed time snuggled next to my brother, sometimes holding him while he cried. He was in bad shape at times and wouldn’t let anyone hear of it from him, but I knew. We talked for hours, watched his favorite shows, but most of all, we both had to rest but made the best of it.

Looking back now, I know it’s one of the first major episodes of fibromyalgia – or whatever doctors can’t figure out what I have.

Just one example of my symptoms before I was positive something was seriously ‘wrong’ with me.

Changing the subject a bit, away from my precious brother who’s now passed, I turn your attention to me, this week.

With fibromyalgia, bursitis pain in the shoulders is common. Two years ago, it was in my shoulders and hips. It was the worst right before my Fibro diagnosis. I’ve battled it on and off since then, and recently I had a minor flare with my shoulders. I got through it of course and shrugged it off the best I could. Worse things were going on in my body (more on that another time).

Last Sunday night I’d woke up from a sound sleep with the worst burning, searing pain in my right shoulder. I shot up out of bed and tried to move it around and discovered I would not raise my arm very high without excruciating pain. Not good. I put my ever-ready heating pad on my shoulder, laid flat on my back, and hoped the heat would mask my pain long enough to get back to sleep.

No go. The pain was so bad…no position or heat helped. I actually felt better standing up so my arm could hang down. So there I was in the middle of the night, writhing in pain, unable to lay down, pacing around my bedroom in pain.

I was up all night tossing the idea of an ER visit around and talked myself out of it a few times, rationalizing that I could go to minor emergency in the morning. At about 6 am I said HELL NO! I NEED RELIEF! I drove myself to the emergency room.

Bottom line to that visit: x-Ray, no broken bones, a sling, pain RX, and a referral to an ortho doctor.

I researched the ortho doc (of course) and he is well known in his field, and appears was married because his marriage announcement (came up in Google search) was in the New York Times. I admit it…I read it..I was a little jealous. He is good looking! I digress.

When he walked in, he introduced himself and asked questions then did a very quick ‘raise your arms’ examination. Very quick.

He is convinced I have Adhesive capsulitis of shoulder (Also known as frozen shoulder).

Basically, between my diabetes and the possibility of me having something autoimmune (it’s an ongoing investigation because no one knows what I have), I likely have scar tissue just randomly growing in my shoulder, limiting the pathway for the muscles and tendons in my shoulder from free motion. Let me tell you – this pain sucks!

6-8 weeks of anti-inflammatory meds and pain pills and physical therapy 2xs a week. If all of that is unsuccessful, I’d go under general anesthesia and the doc would move my arm in ways that would hopefully break up the adhesions. If that isn’t successful, surgery to remove adhesions is next.

Adhesions. Yeah. I know those. I have abdominal adhesions from multiple endometriosis surgeries (years ago). Adhesions account for ten of the last 15 years of my pain. Hell yeah I know adhesions. Again, I digress.

Me: I don’t think Cymbalta has done what we hoped it would over these past two years.

Doc: Ok…

Me: I don’t have help with laundry, or vacuuming and light cleaning from my daughter anymore (I paid her to help). You know, she’s at that age. It literally pains me, but she and my other daughter have other priorities right now and I have no help.

Doc: You live alone, right?

Me: Yes. (I used to feel awkward saying yes to that question, but now it’s like a badge of accomplishment).

The doc stared at my recent blood test and biopsy results. I can see a WTF look come across her face – not the kind of look that shows sudden discovery or alarm – more like a Whatnow? kinda look and I felt the need to break the silence.

Me: There’s never a straight line to an answer.

Doc: No there isn’t…not in my field – another long pause – Maybe we are taking the wrong approach with you. Maybe we ought to take the autoimmune road.

Me (asking myself – haven’t we already? But I knew the answer. Officially fibromyalgia isn’t classified as autoimmune.): Ok. What does that mean?

She prescribed Plaquenil and Prednisone, and half the dose of Cymbalta. I had no idea if the Plaquenil would be of any benefit, but was ecstatic I’d have Prednisone in my arsenal. I knew what Prednisone could do – I could be nearly as capable as I was before I got the F word. I was excited!

Four days in to my new Rx regimen…I woke up and stretched without wincing! I walked downstairs without feeling both ankles were broken, made coffee, fed Bella and Tucker (my two dog-sized felines), emptied the dishwasher, put the trash in my cart for the next time I leave the house, and headed back upstairs feeling pretty pleased with myself.

I finished my coffee while listening to music. It was great. No pain so far. I put away some clothes from last week’s ‘I gotta have clean clothes or buy them scenario’, vacuumed and mopped my kitchen floor. I vacuumed my bedroom.

I thought, wow. I am finally ok – or at least close. I will do a little like this at a time and then there is no stopping me!
I rested the rest of the day. Didn’t want to expect too much from my independence from pain. I took a 2 hour nap – surely I wasn’t doing too much and the rest was the right thing for my body. I had to. I work full time and had to be ready for Monday.

A very long night trying to find a position to sleep comfortably. It gets hot in my loft bedroom, so a fan is necessary to keep from cooking on my best friend (heating pad). The air from the fan felt like it was burning my skin. Every turn shot pain in my arms and back.

So. Here I am. Monday morning and can’t move. No coffee. No music. No stretching. Just pain.

Feeling foolish, and missing a day of work. My hands are tired and hurting from writing this….so I leave you, turning in my normal card.